Test Results

[Tracy414]

4 hours ago, knitty kitty said:

@Tracy414,

Welcome!

I have DH and I've had serionegative test results.  I found this article in my researching and thought you would be interested.  It's from 2019.

Dermatitis Herpetiformis: Novel Perspectives

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6579917/

"...recent evidence suggested that DH is changing. Firstly, some studies reported a reduced incidence of DH, probably due to early recognition of celiac disease, so that there is not enough time for DH to develop. Moreover, data from Japanese literature highlighted the absence of intestinal involvement as well as of the typical serological markers of celiac disease (i.e., anti-tTG antibodies) in Japanese patients with DH. Similar cases may also occur in Caucasian patients, complicating DH diagnosis. The latter relies on the combination of clinical, histopathologic, and immunopathologic findings."

And...

...the closest association occurs with HLA-DQ2 (combination of the DQA1*0501 and DQB1*02 alleles) and DQ8 (combination of the DQA1*03 and DQB1*0302 alleles)..."

That rash on your back and scalp may well be DH which explains the negative blood tests for Celiac according to this article.

Hope this helps!

Wow! Thank you for sharing. The rash I had, started bilaterally and spread the same way. It was essentially a pattern that was equal on both sides of my body. It was so weird. It was also on my scalp. Insanely itchy!! I didn’t itch much in hopes it would stop spreading! I wouldn’t say mine ever looked like blisters, but definitely left my skin “stained” for weeks. My only regret is not seeing dermatology right away. I went to a primary care person and the steroids shut it down. Not sure if that would happen with DH. I continue to have an insanely itchy scalp with bumps coming and going. I cannot attached my photos to my response, they are too big! 

[Tracy414]

4 hours ago, knitty kitty said:

@Tracy414,

Welcome!

I have DH and I've had serionegative test results.  I found this article in my researching and thought you would be interested.  It's from 2019.

Dermatitis Herpetiformis: Novel Perspectives

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6579917/

"...recent evidence suggested that DH is changing. Firstly, some studies reported a reduced incidence of DH, probably due to early recognition of celiac disease, so that there is not enough time for DH to develop. Moreover, data from Japanese literature highlighted the absence of intestinal involvement as well as of the typical serological markers of celiac disease (i.e., anti-tTG antibodies) in Japanese patients with DH. Similar cases may also occur in Caucasian patients, complicating DH diagnosis. The latter relies on the combination of clinical, histopathologic, and immunopathologic findings."

And...

...the closest association occurs with HLA-DQ2 (combination of the DQA1*0501 and DQB1*02 alleles) and DQ8 (combination of the DQA1*03 and DQB1*0302 alleles)..."

That rash on your back and scalp may well be DH which explains the negative blood tests for Celiac according to this article.

Hope this helps!

https://share.icloud.com/photos/09cX8_IuYtwJJwCBfgrKwN9Qw
 

I figured out a way to share my photos. This was days before I saw someone and got steroids. My body has been clear since, it’s my scalp. It actually hurts/aches sometimes and the bumps have a pattern in which they come back it. They haven’t been as bad as they were at first, but wonder if my symptoms will get worse if I continue eating gluten. Thank you again for your response. The article is interesting and insightful! 

[carlisima]

7 hours ago, Tracy414 said:

I’m so glad you were able to get a diagnosis and have an answer! So true. Thank you for sharing, this makes me feel better. Feel off/bad starts to take a toll and you feel like you’re losing your mind when you cannot find an absolute answer. 

You’re not losing your mind. Trust your gut, literally 😊